ASSC8 abstract

 

Personal Identity, Justice and the Regulation of Research in Brain Injury


Joseph J. Fins
Division of Medical Ethics
Departments of Medicine and Public Health
Weill Medical College of Cornell University
New York-Weill Cornell Medical Center, 525 East 68th Street, F-173
New York, NY, USA

Research in severe brain injury is challenging because subjects may be unable to provide informed consent and interventions may alter cognition, memory or affect. This may alter the self and raise fundamental questions about personhood. I will consider these challenges through the prism of the philosopher, Derek Parfit's work on personal identity.
Specifically, I will consider narrative and personal continuity before and after injury and how this should inform our ethical obligations to individuals with severe impairments of consciousness following brain injury. Arguing for narrative and personal continuity, I will reconsider prevailing ethical stances and regulatory norms concerning research on subjects who may lack decision making capacity and suggest novel strategies to engage surrogates. I will assert that our response to research regulation should be cognizant of the connection between the subject's past and current states and the long history of societal neglect sustained by this under-served segment of our population.

Selected references:
Fins JJ. From psychosurgery to neuromodulation and palliation: history's lessons for the ethical conduct and regulation of neuropsychiatric research. Neurosurg Clin N Am. 2003 Apr;14(2):303-19
Fins JJ. Constructing an ethical stereotaxy for severe brain injury: balancing risks, benefits and access. Nat Rev Neurosci. 2003 Apr;4(4):323-7
Fins JJ. A proposed ethical framework for interventional cognitive neuroscience: a consideration of deep brain stimulation in impaired consciousness. Neurol Res. 2000 Apr;22(3):273-8